I am legally a resident of Iroquois Nursing Home, but I have been in Crouse Hospital for 77 days because the Iroquois, under a judge’s order to find appropriate placement for me, has done nothing. Nor has Crouse tried to make them.
In Crouse, I am on ALC (Alternate Level of Care) because I am deemed not to be in need of acute care. Crouse also has failed to find an appropriate placement for me. I have been here 77 days.
I was placed on Palliative Care because a doctor told me that I was dying from uncontrolled diabetes. In fact, I was misdiagnosed. I am suffering from CFIDS, chronic fatigue immune deficiency syndrome.
For 77 days, I have been kept in a single room that is used for isolation. The view out my window is a solid brick wall. I cannot see the sky. I cannot see into the hallway. I have no cable television. I have no family.
If I were in a skilled nursing facility, where I am supposed to be, the facility would be required to provide community meals, religious services, various social activities—movies, concerts, etc.—and I would be escorted outside. In Crouse, I am not provided any suitable social activities to heal my soul in the presence of sickness. Seventy-seven days without appropriate socialization. Think back on all the things you’ve done in the past 77 days. Erase them all, and you have my life.
Because of the CFIDS, I cannot tolerate any medication. My immune system reacts against it. When Crouse put me on oxycodone four months ago, I clearly told them that I would have a negative reaction to it. I said that I didn’t know what or when but based on twelve years’ experience, I knew it would happen. It happened last weekend. I became frighteningly confused, had chills, and spat blood when I brushed my teeth. All this in addition to ongoing constipation, loss of appetite, nausea, depression and low-level confusion.
When I was at home I took care of myself by getting psychotherapy twice a week, massage therapy once a week, and chiropractic adjustment every two weeks. In hospital, I have been denied all these forms of relief. At home, I could call my physician and ask for a referral to a specialist. In hospital, because I am ALC, I cannot access a specialist. The hospital has failed to do it for me. I am only allowed to see the physician once a week, because I am on ALC and they won’t get paid for physician time. I have repeatedly begged to be taken off ALC and nobody will take responsibility for getting that done or telling me how to do it.
Crouse has a team of people who provide Reiki treatments. Approximately once every two weeks, they get to me. I have been here 77 days. If I were at home, I would be getting Reiki once or twice a week.
Crouse has one doctor who does acupuncture. In the community, I had been receiving acupuncture for a decade. I respond to it extremely well. It provides great relief. My doctor recommended that Crouse provide acupuncture three or four times a week. The doctor won’t do it. He has given me exactly two acupuncture treatments in 77 days. He said it was “a favor.” He has healing in his hands. He has chosen to withhold it. His hospital has not directed him otherwise.
Because Iroquois Nursing Home was providing substandard care, and because I complained about it, I have been held in Crouse Hospital for two and a half months without any socialization or proper medical care.
After I reacted to the oxycodone over the weekend, the doctor reduced the dose by half. However, he failed to halve the 10 mg. long-lasting dose I was getting at bedtime. The nurse dealt with it by cutting the tablet in half. Last night’s nurse told me that was totally wrong. The nurse went on at great length to talk about 5 mg. and 10 mg. and short-acting and long-acting. I HAVE ONGOING CONFUSION FROM THE OXYCODON. The stupid nurse kept repeating all this stuff AND DEMANDING THAT I MAKE A DECISION. I COULDN’T! I was sick, in great distress, and she was yammering at me to do something that was impossible for me.
She called the on-call doctor, who refused to change the dosage. The on-call was covering his ass: do nothing, and let the patient suffer, instead of doing something and risk it coming back on him. I finally took some medicine; I don’t know what. Every time every person above the level of nurse comes into my room, they tell me multiple versions of ‘I’m not a normal case.’ No, I’m not BUT I’VE BEEN HERE 77 DAYS: DEAL WITH IT! Multiple times a day, every day, I have been asking for acupuncture and Reiki: Crouse has healing on its staff but will not provide it for me. A couple weeks ago, I got Reiki one day and acupuncture the next, and I coasted in peace and calm for about five days. Now, they offer me nothing to still the torment I suffer. (To be continued)